He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.


Friday, October 28, 2011

CVS Caremark AKC Pats Day part 1. Pre-Game planning

James and I have an incredible opportunity tomorrow, all thanks to a friend I met through writing this blog and some people we're going to meet tomorrow. People who believe in creating amazing opportunities for kids and work really hard to make them happen.

Tomorrow we are invited to participate in the CVS Caremark All Kids Can Patriots Day at my old stomping grounds, Gillette Stadium. I haven't been back there since I was a consultant for the Patriots in '04. We won the Superbowl, James was only 1 and Tony and I had no idea what autism really meant.
It is going to be a really special day, for both of us. Check out what they have planned:

The stadium will be transformed into a “gridiron of dreams” for children with varying disabilities who will spend the afternoon with former New England Patriots players gaining first-hand experience of what it’s like to be a Patriot for the day!

The kids actually get to run out onto the field through the oversized Patriots inflatable helmet. How cool is that?  Then they get to do warm-ups and stretches, cone running drills, and blocking, kicking and throwing skills.  When they are all tired out, we'll enjoy lunch together, and then get autographs and take photos with alumni, and, of course, the day wouldn't be complete without meeting the mascot of the New England Patriots – Pat Patriot, and then visiting The Hall at Patriot Place presented by Raytheon.

I'll be taking tons of pictures and posting a Gil Santos-like play by play on Facebook (on my own wall and on my Running to be Still FB page) and I'll be tweeting as much as @ochocinco usually does. Follow me on twitter by clicking here or by searching the hashtag #AKCPatsDay to get all the action from the day.

Since I adhere to the Brady/ Belichick school of pre-game preparation, there are some things I need to do to prepare for tomorrow. First and foremost, I need replace an outgrown jersey for James so he arrives in uniform. I'm thinking he is a Wes Welker kid. Do you agree?

I can't wait for tomorrow. It is going to be an amazing day, thanks to CVS Caremark All Kids Can.

Monday, October 24, 2011

Tearing Down the Wall

Yesterday was the first day that there was a hint of winter in the air. So, slacker mom that I am, I finally decided to unpack the pool bag. It was filled with typical things- a few empty bottles of sunscreen, kids' goggles and some toys. While I was taking them, out, I realized what a huge thing it was for me to be doing.

We've never had a "pool bag" before. Filled with typical things.

All the memories of this past summer, and of the last 8 summers, came flooding back, completely overwhelming me.

When James first started Early Intervention and was diagnosed on the autism spectrum, I was sure I could handle it all, and it wouldn't change my parenting style too much. I would keep doing all the same playgroups and would keep him in the world, surrounded by other kids. 

Soon though, I found myself cancelling trips to the aquarium, the children's museum, even the zoo around the corner from our house.

I started building a wall around us with each cancellation. With each "no thanks, I don't think so", the wall got higher and higher. By the time James was 8, I had created a fortress. I kept my boys inside it as much as I could. Summers were spent in the fenced in front yard with an inflatable pool. Outings were limited to therapy appointments and visits with other ASD families.  Always controlled and always with an escape plan in mind.

Poor Johnny was stuck with us even though he desperately wanted to get out. I had to say no to the playdate requests, because I knew I couldn't send him without his brother, and I knew his brother couldn't handle it.

I started to hate summer, and felt horribly guilty for feeling that way. What kind of mom was I that I didn't want to spend those supposed carefree days with my young sons, without the limitations and rules that go along with the school year?

We were becoming prisoners inside that fortress, only I couldn't see it. All I could see was the pain and the fear in James' eyes when confronted with something unexpected outside the wall, and I fiercely wanted to protect him.

This past summer, though, I finally started to break down the wall.

Some friends belonged to a pool club that was totally geared towards kids our boys' age. They suggested we join because Johnny had visited and loved it.  I was hesitant.  It was more like a water park than a pool.  It was huge, and there were so many kids.  I was sure it was going to be an incredibly expensive train wreck, but we decided to try it out, just for Johnny.  As summer got closer, I started dreading it, again.

The first day we went, I watched as Johnny took his brother by the hand and led him around the enormous wave pool.

A few days later, I watched James play with a friend. Splashing. Dunking. Chasing.

The second week, Johnny was scared of the obstacle course and was asking for my help. I got into the pool to hold him steady and heard a friend yell "Hey Smother!  Get outta there!" I laughed and got out to go join my friends, while I watched Johnny struggle in frustration. The next day he did the whole obstacle course. 30 times.

In August, I actually played tennis while my kids were in the wave pool. I don't know whose life I was leading, but it wasn't the one I had for the past 8 years, walled up with my boys away from the world, ruled by autism and anxiety.

We were the first ones in on our last day there, anxiously awaiting the arrival of a new friend and her sons. The pool manager approached James and handed him the keys to the pool. He instructed James to go around to the other side of the wave pool, put the key in the lock box and turn it.  I started to intervene, and I remembered the "Smother" comment. I backed off and held my breath a little.

I watched as James gave me a nervous look and then tentatively walked around the pool by himself. He fumbled and found the key hole, and struggled to turn the key. And he looked up to see the waves start rolling into the pool. He smiled. His brother cheered.

I turned and went to the desk to sign up for next summer.

I know we are always going to face obstacles and challenges, and some times are going to be very, very tough.  But going through the pool bag yesterday, I realized how far James has come over the past 8 years. 

I also realized how far I've come. 

I think now I'm going to be able to tear down the wall, day by day, and let the outside world in.  He's playing soccer this fall, and we are going to try skiing this winter. And for the first time in 8 years, I'm already excited about spending next summer with my boys.

I'm going to keep the pool bag visible though, just for those days when I need a little extra help.

Thursday, October 13, 2011

Posting at SPDBN

A few days ago, a post I had written was published on a website called SPD Blogger Network.  It was called The Kiss that blew me away and it was about something sensational that James did last week.

SPD stands for Sensory Processing Disorder, and it is something that affects James every moment of his life and often debilitates him.  He is overwhelmed by the world around him and is unable to filter everything out the way that you and I can, to only pay attention to what he needs. 

Everything.  All the sounds, the smells, the lights, the random movements of everyday living.  They all come at him full force, all at once.  He can't block any of it out. 

Imagine how distracted you would be every moment of the day.  Think of how difficult it would be to focus on anything with so much sensory input being hurled at you.  Consider how scary it must be to feel like you are being assaulted by things that don't seem to bother anyone around you.

Even his own body fights against his mind, so simple things we take for granted, like spitting out toothpaste, are incredibly difficult for him.

A child's favorite act of rolling down a hill is something that he has to break down, step by step, watching demonstrations over and over again, to try and get his body to be able to make the movements necessary to be able to do it.  It pretty much takes all the fun and spontaneity out of the act when you have to work so hard to be able to do it.

It is painful to watch your child go through this every moment of every day. It has consumed my mind for the past 8 years.  And although we have incredibly supportive family and friends,  there have only been a handful of people I could actually get advice from because SPD is so complex, and I have often felt alone.

Until recently. 

The SPD Blogger Network is a 24/7 virtual support group for parents to share stories, both successes and challenges, to find answers to questions, to vent, or simply to hang out in a "place" where other parents get it. 

I wish to hell I had this site when we first started on this journey, but I'm thankful to have it now.

SPDBN shared my glimpse of a single moment where one simple gesture made a huge difference to me.  I'm grateful that people who read that post understood the significance of that moment and gave me such amazing words of support, and I want to continue to contribute to this incredibly welcoming community in any way that I can. 

If you haven't had a chance to read about the kiss, it would mean a lot to me if you'd click the link and read my story on SPD Blogger Network.  And once you are there, please look around and read the stories from other contributors, parents like me, because each of the stories is important, and each is sensational.

Monday, October 10, 2011

Everlasting...

Last year for our 10th anniversary, I desperately needed to get away with Tony.  I needed the chance to get back to just us, if only for a day.  A good friend generously offered us her house on a beautiful river, where we could easily drop our kids at my in-laws and spend time together alone, and I am forever grateful for what she gave us.

The weekend was amazing.  The weather was perfect, crisp and clear like our wedding day.  We spent the afternoon relaxing in the sun watching the boats go by, just talking to each other without interruption.  I brought the photo album(s) from our wedding - we had over 15 rolls of film that our friends took during the day and I put into books as soon as we were married and I adored, but after life with kids started we never got to spend any significant time looking at.

Going through those albums, alone for the first time since the kids were born and we understood what parenting meant and what autism and sensory processing disorder could do to try and break us into a million pieces, we talked about what that day actually meant to us.  

Of course it is always going to be one of the three most incredibly special days of my life, but together we talked about how that day was totally focused on the fact that we were with all our family and friends, and that this, 10 years ago, was the last time we were all together celebrating with the people who meant so much to us.

So this year for our 11th, we decided that our celebration would be to try to bring our friends and family back together to that day.  We hope this quick video will bring you some smiles.

And for our friends we weren't able to share the day with (blame Tony's large, well-connected  Italian family) and all the amazing friends we've met on our journey since then, we know how lucky we are and we can't imagine life without you all in it.

We can't begin to pay you back for the support you've given us, but we appreciate you every second of every day.

Love you always,
Kris and Tony 

p.s. Some people are having trouble watching the video below on mobile phones - here is the direct youtube link if you need it. http://www.youtube.com/watch?v=_nknM3vfu7c

video